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In a message dated 04/24/2001 6:14:14 PM Central Daylight Time,

ryork@... writes:

<< think I am also a bit stressed and depressed. >>

Ros, if you get this, call a Psychiatrist, Depression is an illness that can

be treated. Don't leave yourself down in the pits, it's horrible, I know

from firsthand experience! Take care! Love, Judy O

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In a message dated 05/03/2001 4:47:04 AM Central Daylight Time,

godave@... writes:

<< only to sit there for 30

minutes and be told that the doctor had too many " real sick " people to

see and emergencies, >>

Congratulations Marilyn on your amazing recovery! Good to know that you re

not " real sick " , are you faking this RP stuff? (Don't you wish!) Love, Judy

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In a message dated 05/04/2001 2:49:00 AM Central Daylight Time,

kazoobills@... writes:

<< Hope this finds everyone else feeling good, we still plan on seeing you

all

in Tulsa! >>

Patty, sorry to hear you are still flaring. I hope our jokes are not setting

off your coughing, I truly do believe that laughter is the best medicine, but

in this case it might not! Hang in there, hopefully you'll be fine by the

time you get to Tulsa. Love, Judy

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  • 2 weeks later...
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In a message dated 5/14/01 5:13:43 PM Pacific Daylight Time,

godave@... writes:

<< When I took the plaquenil I ended up with a very bad rash. It took

weeks to go a way. I wouldn't wish that reaction on my worst enemy.

Hope that isn't what you had. Take care. Hope it clears up real soon.

>>

Marilyn, this is what the dr wants to put me on next. Plaquenil.... Has

anyone else had this reaction to it? Wonder if it will work any better for

me than the rest. Guess I'll just wait to see what they decide.

hugs

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Thanks Marilyn, I sure hope it goes away soon too. My hands are so raw and

feet are sore from it too. The lesions I can live with but its just

frustrating. I sound like such a bitch sometimes but I've had this for three

months +. You have a great day....Sue

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  • 10 months later...
Guest guest

:

Glad everything went well with your surgery. Take Care of yourself now and get some more rest.

Vera

*************************

Subject: Hi all

Hello everyone. I just wanted to drop a note and tell all that my surgery went ok and to say thanks for all the prayers. The recovery nurse did have a difficult time waking me up. I was never in any danger but they said that I just refused to come around. Anyway I'm just trying to recover from the soreness thanks again.

Naro

Memphis, TN

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  • 4 weeks later...
Guest guest

Hi Belinda,

I'm sorry you are in so much pain. I'm hoping your family will accept your

diagnosis and support you and help you go forward. Remember that life is

every moment, and none of us knows when our number will be called. We'll be

here for you always.

Love,

Pam

hi all

> I just wanted to let you know that the doctor has diagnosed me with

> cbgd. Corticobasal degeneration. The last couple of days I have been

> out trying to do too much! Of course, that is not nearly as much as I

> use to do, only a small fraction. I have also found out that doing

> too much is just as bad as not doing anything. I am in so much pain

> as I write this. Why am I writing this if I am in a lot of pain

> because I still am fighting. According to my father in law and my

> husband as long as I keep a positie attitude this is going to go

> away. I am keeping a positive attitude but I feel like all the ones

> that have gone before me also kept a positive attitude and tried

> every vitamin out there that is suppose to help. I believe I am going

> to heaven when I die and that the Lord has a plan for all of us. I

> know that I am not going before my time and everyone has their time

> and there is nothing we can do to stop it. There are some out there

> that might beg the difference with me, so be it. I am telling you

> what I believe. I think also that I am pouring out some of my

> frustrations but I believe that all of you know that I am entitled to

> do this because you wouldn't be here on this message board if you

> didn't. All of us at one time or another have to do it and probably

> more than once. I want you all to know that I appreciate you being

> here for me and for everyone else that comes to this message board.

> Some of you don't ever have to come to this message board again but

> you do and I thank you also. Well time to lay this body down to rest

> again and pray some of this pain disappears. Thank you all from the

> bottom of my heart.

> God bless you all,

> Belinda

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Belinda,

CBGD is about the same as MSA, little difference in symptoms, but a

difference in how the brain cells die. Doing your exercises and keeping a

positive attitude as well as drinking enough liquids will help you keep

movement as long as possible, so don't give up on that. The pain is still

usually associated with cramped muscles and there are things to try for

muscle cramps and pain. Talk to your doctor about pain relief from cramped

muscles. If you want the address to the CBGD list - much like this one, ask

and I'll send it to you.

Take care, Bill Werre

belnorest wrote:

> I just wanted to let you know that the doctor has diagnosed me with

> cbgd. Corticobasal degeneration. The last couple of days I have been

> out trying to do too much! Of course, that is not nearly as much as I

> use to do, only a small fraction. I have also found out that doing

> too much is just as bad as not doing anything. I am in so much pain

> as I write this. Why am I writing this if I am in a lot of pain

> because I still am fighting. According to my father in law and my

> husband as long as I keep a positie attitude this is going to go

> away. I am keeping a positive attitude but I feel like all the ones

> that have gone before me also kept a positive attitude and tried

> every vitamin out there that is suppose to help. I believe I am going

> to heaven when I die and that the Lord has a plan for all of us. I

> know that I am not going before my time and everyone has their time

> and there is nothing we can do to stop it. There are some out there

> that might beg the difference with me, so be it. I am telling you

> what I believe. I think also that I am pouring out some of my

> frustrations but I believe that all of you know that I am entitled to

> do this because you wouldn't be here on this message board if you

> didn't. All of us at one time or another have to do it and probably

> more than once. I want you all to know that I appreciate you being

> here for me and for everyone else that comes to this message board.

> Some of you don't ever have to come to this message board again but

> you do and I thank you also. Well time to lay this body down to rest

> again and pray some of this pain disappears. Thank you all from the

> bottom of my heart.

> God bless you all,

> Belinda

>

> If you do not wish to belong to shydrager, you may

> unsubscribe by sending a blank email to

>

> shydrager-unsubscribe

>

>

>

>

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Belinda,

CBGD is about the same as MSA, little difference in symptoms, but a

difference in how the brain cells die. Doing your exercises and keeping a

positive attitude as well as drinking enough liquids will help you keep

movement as long as possible, so don't give up on that. The pain is still

usually associated with cramped muscles and there are things to try for

muscle cramps and pain. Talk to your doctor about pain relief from cramped

muscles. If you want the address to the CBGD list - much like this one, ask

and I'll send it to you.

Take care, Bill Werre

belnorest wrote:

> I just wanted to let you know that the doctor has diagnosed me with

> cbgd. Corticobasal degeneration. The last couple of days I have been

> out trying to do too much! Of course, that is not nearly as much as I

> use to do, only a small fraction. I have also found out that doing

> too much is just as bad as not doing anything. I am in so much pain

> as I write this. Why am I writing this if I am in a lot of pain

> because I still am fighting. According to my father in law and my

> husband as long as I keep a positie attitude this is going to go

> away. I am keeping a positive attitude but I feel like all the ones

> that have gone before me also kept a positive attitude and tried

> every vitamin out there that is suppose to help. I believe I am going

> to heaven when I die and that the Lord has a plan for all of us. I

> know that I am not going before my time and everyone has their time

> and there is nothing we can do to stop it. There are some out there

> that might beg the difference with me, so be it. I am telling you

> what I believe. I think also that I am pouring out some of my

> frustrations but I believe that all of you know that I am entitled to

> do this because you wouldn't be here on this message board if you

> didn't. All of us at one time or another have to do it and probably

> more than once. I want you all to know that I appreciate you being

> here for me and for everyone else that comes to this message board.

> Some of you don't ever have to come to this message board again but

> you do and I thank you also. Well time to lay this body down to rest

> again and pray some of this pain disappears. Thank you all from the

> bottom of my heart.

> God bless you all,

> Belinda

>

> If you do not wish to belong to shydrager, you may

> unsubscribe by sending a blank email to

>

> shydrager-unsubscribe

>

>

>

>

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Bill,

Thank you. I have joined the cbgd board. I have met some nice people

there. There isn't as much posting on that site. I have not met

anyone else on there who is sick. I asked the night they had chat

time but no one could tell me why. One lady did say it was because

she thought it was only for the caregivers to vent their

frustrations. I told her to vent all she wanted to because I

understood her position. I know it is hard to take care of your loved

ones 24/7. I also know it is done because there is a lot of love for

your loved one. I told her also that it was good to hear what both

sides were feeling. No one wants to be sick and no one wants their

loved one to be sick. I have grown a deep affection for all of you so

I can't say ok I don't have MSA so I am going to unsubscribe. You

aren't getting away from me that easy! I know that some of the ones

that do want to unsubscribe can't figure out how to get away from you

either! hehe. , you crack me up! I love the message about Duh!

read the directions at the bottom of this message or something

similar! I have been taking methadone but it does not help the muscle

pain so I will call my pain doctor and ask him to give me something

for that if he can. I am not sure if neurotin is suppose to be a

muscle relaxer or not. I take that also.

God Bless,

Belinda

>

> > I just wanted to let you know that the doctor has diagnosed me

with

> > cbgd. Corticobasal degeneration. The last couple of days I have

been

> > out trying to do too much! Of course, that is not nearly as much

as I

> > use to do, only a small fraction. I have also found out that doing

> > too much is just as bad as not doing anything. I am in so much

pain

> > as I write this. Why am I writing this if I am in a lot of pain

> > because I still am fighting. According to my father in law and my

> > husband as long as I keep a positie attitude this is going to go

> > away. I am keeping a positive attitude but I feel like all the

ones

> > that have gone before me also kept a positive attitude and tried

> > every vitamin out there that is suppose to help. I believe I am

going

> > to heaven when I die and that the Lord has a plan for all of us. I

> > know that I am not going before my time and everyone has their

time

> > and there is nothing we can do to stop it. There are some out

there

> > that might beg the difference with me, so be it. I am telling you

> > what I believe. I think also that I am pouring out some of my

> > frustrations but I believe that all of you know that I am

entitled to

> > do this because you wouldn't be here on this message board if you

> > didn't. All of us at one time or another have to do it and

probably

> > more than once. I want you all to know that I appreciate you being

> > here for me and for everyone else that comes to this message

board.

> > Some of you don't ever have to come to this message board again

but

> > you do and I thank you also. Well time to lay this body down to

rest

> > again and pray some of this pain disappears. Thank you all from

the

> > bottom of my heart.

> > God bless you all,

> > Belinda

> >

> > If you do not wish to belong to shydrager, you may

> > unsubscribe by sending a blank email to

> >

> > shydrager-unsubscribe@y...

> >

> >

> >

> >

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Pam,

Thank you for your reply. They will come around or I will have to hit

them upside their head with my cane. Ok, just kidding! I won't do

that. Well, Rose and I are already cane dueling partners! hehe I

appreciate you and everyone.

God bless,

Belinda

> Hi Belinda,

> I'm sorry you are in so much pain. I'm hoping your family will

accept your

> diagnosis and support you and help you go forward. Remember that

life is

> every moment, and none of us knows when our number will be called.

We'll be

> here for you always.

> Love,

> Pam

>

> hi all

>

>

> > I just wanted to let you know that the doctor has diagnosed me

with

> > cbgd. Corticobasal degeneration. The last couple of days I have

been

> > out trying to do too much! Of course, that is not nearly as much

as I

> > use to do, only a small fraction. I have also found out that doing

> > too much is just as bad as not doing anything. I am in so much

pain

> > as I write this. Why am I writing this if I am in a lot of pain

> > because I still am fighting. According to my father in law and my

> > husband as long as I keep a positie attitude this is going to go

> > away. I am keeping a positive attitude but I feel like all the

ones

> > that have gone before me also kept a positive attitude and tried

> > every vitamin out there that is suppose to help. I believe I am

going

> > to heaven when I die and that the Lord has a plan for all of us. I

> > know that I am not going before my time and everyone has their

time

> > and there is nothing we can do to stop it. There are some out

there

> > that might beg the difference with me, so be it. I am telling you

> > what I believe. I think also that I am pouring out some of my

> > frustrations but I believe that all of you know that I am

entitled to

> > do this because you wouldn't be here on this message board if you

> > didn't. All of us at one time or another have to do it and

probably

> > more than once. I want you all to know that I appreciate you being

> > here for me and for everyone else that comes to this message

board.

> > Some of you don't ever have to come to this message board again

but

> > you do and I thank you also. Well time to lay this body down to

rest

> > again and pray some of this pain disappears. Thank you all from

the

> > bottom of my heart.

> > God bless you all,

> > Belinda

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Guest guest

Pam,

Thank you for your reply. They will come around or I will have to hit

them upside their head with my cane. Ok, just kidding! I won't do

that. Well, Rose and I are already cane dueling partners! hehe I

appreciate you and everyone.

God bless,

Belinda

> Hi Belinda,

> I'm sorry you are in so much pain. I'm hoping your family will

accept your

> diagnosis and support you and help you go forward. Remember that

life is

> every moment, and none of us knows when our number will be called.

We'll be

> here for you always.

> Love,

> Pam

>

> hi all

>

>

> > I just wanted to let you know that the doctor has diagnosed me

with

> > cbgd. Corticobasal degeneration. The last couple of days I have

been

> > out trying to do too much! Of course, that is not nearly as much

as I

> > use to do, only a small fraction. I have also found out that doing

> > too much is just as bad as not doing anything. I am in so much

pain

> > as I write this. Why am I writing this if I am in a lot of pain

> > because I still am fighting. According to my father in law and my

> > husband as long as I keep a positie attitude this is going to go

> > away. I am keeping a positive attitude but I feel like all the

ones

> > that have gone before me also kept a positive attitude and tried

> > every vitamin out there that is suppose to help. I believe I am

going

> > to heaven when I die and that the Lord has a plan for all of us. I

> > know that I am not going before my time and everyone has their

time

> > and there is nothing we can do to stop it. There are some out

there

> > that might beg the difference with me, so be it. I am telling you

> > what I believe. I think also that I am pouring out some of my

> > frustrations but I believe that all of you know that I am

entitled to

> > do this because you wouldn't be here on this message board if you

> > didn't. All of us at one time or another have to do it and

probably

> > more than once. I want you all to know that I appreciate you being

> > here for me and for everyone else that comes to this message

board.

> > Some of you don't ever have to come to this message board again

but

> > you do and I thank you also. Well time to lay this body down to

rest

> > again and pray some of this pain disappears. Thank you all from

the

> > bottom of my heart.

> > God bless you all,

> > Belinda

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Guest guest

Belinda,

There are a few patients who have posted on the CBGD list in the past. I

think one's name is Jim and he is from Mich. if I remember correctly. I am on

both lists as there was some question as to what Charlotte had, but I feel it

was MSA.

We don't mind if you stay here, we have people with all kinds of things here

anyway. Be careful of Rose, she can get feisty with that cane, we hope to

see her on April 28th at the Moller's.

Take care, Bill Werre

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Guest guest

Belinda,

There are a few patients who have posted on the CBGD list in the past. I

think one's name is Jim and he is from Mich. if I remember correctly. I am on

both lists as there was some question as to what Charlotte had, but I feel it

was MSA.

We don't mind if you stay here, we have people with all kinds of things here

anyway. Be careful of Rose, she can get feisty with that cane, we hope to

see her on April 28th at the Moller's.

Take care, Bill Werre

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Guest guest

Belinda, sorry to read you are in pain, you are in our prayers. My 90+ year

old great aunt always says " use it - or lose it " .....so keep fighting!!!!!

(or as the kids say today, " You GO GIRL " !!! A positive attitude helps, no

matter what. When I'm depressed about my dad, my mom kicks my butt, and

when she's crying or venting her frustration about my dad being sick, I'm

trying to give her encouragement. We all can't be sad at the same time, so

we, too, cling to hope for something that will help. Hang in there. I seeded

my whole garden today in the 90 degree heat, until my face turned purple.

I'm a blonde, so that is NOT an attractive picture, but my zinnias are all

in. Dahlias, too, this year. At least I did something today. Cindy B in

Philly.

hi all

> I just wanted to let you know that the doctor has diagnosed me with

> cbgd. Corticobasal degeneration. The last couple of days I have been

> out trying to do too much! Of course, that is not nearly as much as I

> use to do, only a small fraction. I have also found out that doing

> too much is just as bad as not doing anything. I am in so much pain

> as I write this. Why am I writing this if I am in a lot of pain

> because I still am fighting. According to my father in law and my

> husband as long as I keep a positie attitude this is going to go

> away. I am keeping a positive attitude but I feel like all the ones

> that have gone before me also kept a positive attitude and tried

> every vitamin out there that is suppose to help. I believe I am going

> to heaven when I die and that the Lord has a plan for all of us. I

> know that I am not going before my time and everyone has their time

> and there is nothing we can do to stop it. There are some out there

> that might beg the difference with me, so be it. I am telling you

> what I believe. I think also that I am pouring out some of my

> frustrations but I believe that all of you know that I am entitled to

> do this because you wouldn't be here on this message board if you

> didn't. All of us at one time or another have to do it and probably

> more than once. I want you all to know that I appreciate you being

> here for me and for everyone else that comes to this message board.

> Some of you don't ever have to come to this message board again but

> you do and I thank you also. Well time to lay this body down to rest

> again and pray some of this pain disappears. Thank you all from the

> bottom of my heart.

> God bless you all,

> Belinda

>

>

> If you do not wish to belong to shydrager, you may

> unsubscribe by sending a blank email to

>

> shydrager-unsubscribe

>

>

>

>

>

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Guest guest

Belinda, sorry to read you are in pain, you are in our prayers. My 90+ year

old great aunt always says " use it - or lose it " .....so keep fighting!!!!!

(or as the kids say today, " You GO GIRL " !!! A positive attitude helps, no

matter what. When I'm depressed about my dad, my mom kicks my butt, and

when she's crying or venting her frustration about my dad being sick, I'm

trying to give her encouragement. We all can't be sad at the same time, so

we, too, cling to hope for something that will help. Hang in there. I seeded

my whole garden today in the 90 degree heat, until my face turned purple.

I'm a blonde, so that is NOT an attractive picture, but my zinnias are all

in. Dahlias, too, this year. At least I did something today. Cindy B in

Philly.

hi all

> I just wanted to let you know that the doctor has diagnosed me with

> cbgd. Corticobasal degeneration. The last couple of days I have been

> out trying to do too much! Of course, that is not nearly as much as I

> use to do, only a small fraction. I have also found out that doing

> too much is just as bad as not doing anything. I am in so much pain

> as I write this. Why am I writing this if I am in a lot of pain

> because I still am fighting. According to my father in law and my

> husband as long as I keep a positie attitude this is going to go

> away. I am keeping a positive attitude but I feel like all the ones

> that have gone before me also kept a positive attitude and tried

> every vitamin out there that is suppose to help. I believe I am going

> to heaven when I die and that the Lord has a plan for all of us. I

> know that I am not going before my time and everyone has their time

> and there is nothing we can do to stop it. There are some out there

> that might beg the difference with me, so be it. I am telling you

> what I believe. I think also that I am pouring out some of my

> frustrations but I believe that all of you know that I am entitled to

> do this because you wouldn't be here on this message board if you

> didn't. All of us at one time or another have to do it and probably

> more than once. I want you all to know that I appreciate you being

> here for me and for everyone else that comes to this message board.

> Some of you don't ever have to come to this message board again but

> you do and I thank you also. Well time to lay this body down to rest

> again and pray some of this pain disappears. Thank you all from the

> bottom of my heart.

> God bless you all,

> Belinda

>

>

> If you do not wish to belong to shydrager, you may

> unsubscribe by sending a blank email to

>

> shydrager-unsubscribe

>

>

>

>

>

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Guest guest

Thanks Barb! I sure will, God's Will is the only way we can go, to go

on our own will doesn't help at all that's for sure!

God Bless,

Belinda

>

>

> Belinda,

> Keep up the positive attitude and know that GOD's WILL will be

done!!!

> Barb In swva

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Guest guest

Thanks Barb! I sure will, God's Will is the only way we can go, to go

on our own will doesn't help at all that's for sure!

God Bless,

Belinda

>

>

> Belinda,

> Keep up the positive attitude and know that GOD's WILL will be

done!!!

> Barb In swva

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Guest guest

Thanks Barb! I sure will, God's Will is the only way we can go, to go

on our own will doesn't help at all that's for sure!

God Bless,

Belinda

>

>

> Belinda,

> Keep up the positive attitude and know that GOD's WILL will be

done!!!

> Barb In swva

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  • 2 months later...
Guest guest

> Hi my panc. pals,

> One question for those of you that have gone through the appeals

> process.....is it wise to tell the judge just how much & how often

I take pain meds? My mother is afraid I'll have my drivers license

> revoked or not renewed. Louisiana just passed a law against driving

> under the influence of prescription meds. Believe it or not...that

> carries a stiffer sentence than being drunk. Just a trace of

> narcotics lands a conviction. <<<<

Hi ,

This is a good question. We had a thread previously on driving and

the use of narcotics which generated some good comments. Your post

also asks about disability and the use of pain medication. I received

Disability due to Depression and Pain secondary to Pancreatitis.

Therefore, disclosing how much and how often I took pain medication

was imperative to my case.

There is no relationship between the judge at a hearing and the state

DL board, at least in Indiana. There are many states that have laws

against DUI of Rx medications. The warning on the prescription

bottles or patches says, " Do Not Operate Machinery or Operate a Motor

Vehicle While Taking This Drug. " Both of these things were done

because many Rx pain medications as well as other medications like

antidepressants can impair our ability to think and act, both key

components for safe driving.

This is a controversial subject, especially for people with chronic

pain requiring long term or frequent narcotics. It interferes with

our ability to do the things we need to get done. Everyone has to

know their own limits and how they respond to medication. For me,

that information isn't always obtained from me. I can feel completely

safe, coherent, and functional, but isn't that what most intoxicated

people say.

I would rather choose to loose the right to drive than loose that

right to choose.

Karyn RN

Founder/President

KarynWms@.../

http://www.pancassociation.org

Many People, Many Faces, One Voice

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> Hi my panc. pals,

> One question for those of you that have gone through the appeals

> process.....is it wise to tell the judge just how much & how often

I take pain meds? My mother is afraid I'll have my drivers license

> revoked or not renewed. Louisiana just passed a law against driving

> under the influence of prescription meds. Believe it or not...that

> carries a stiffer sentence than being drunk. Just a trace of

> narcotics lands a conviction. <<<<

Hi ,

This is a good question. We had a thread previously on driving and

the use of narcotics which generated some good comments. Your post

also asks about disability and the use of pain medication. I received

Disability due to Depression and Pain secondary to Pancreatitis.

Therefore, disclosing how much and how often I took pain medication

was imperative to my case.

There is no relationship between the judge at a hearing and the state

DL board, at least in Indiana. There are many states that have laws

against DUI of Rx medications. The warning on the prescription

bottles or patches says, " Do Not Operate Machinery or Operate a Motor

Vehicle While Taking This Drug. " Both of these things were done

because many Rx pain medications as well as other medications like

antidepressants can impair our ability to think and act, both key

components for safe driving.

This is a controversial subject, especially for people with chronic

pain requiring long term or frequent narcotics. It interferes with

our ability to do the things we need to get done. Everyone has to

know their own limits and how they respond to medication. For me,

that information isn't always obtained from me. I can feel completely

safe, coherent, and functional, but isn't that what most intoxicated

people say.

I would rather choose to loose the right to drive than loose that

right to choose.

Karyn RN

Founder/President

KarynWms@.../

http://www.pancassociation.org

Many People, Many Faces, One Voice

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Hi ,

I'm sorry to hear of your current problems and your SSDI status. FWIW, A list

of your meds, dosage, and usage could be quite a good contribution for your

SSDI case. I would suggest a medical opinion letter stating that the normal

med usage for you would be dehabilating from your occupation. Also, if you

normally get your scripts filled at the same pharmacy, they can give you a

historical printout of all of your scripts to be placed as evidence to the

SSDI. As for driving, I don't think that's a problem as the SS office cannot

be responsible for your driving, and even if your case goes to the

administrative judge level, that individual cannot be responsible for your

driving. However, there is also a positive aspect to that issue in that while

on heavy narcotic meds, you might state you cannot drive safely and thus

cannot depend on getting either to of from a workplace.

Good luck in your quest with the SSA office.

Best wishes, Poncho - GA

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